Causes of lymphoedema

Lymphoedema that is caused by cancer treatments or the cancer itself can be due to the following:

Surgery to remove lymph nodes. This can interrupt the normal flow of the lymphatic system, leading to a build-up of fluid in the affected area.

Radiotherapy to the lymph nodes. This can cause scar tissue (hardening of the tissue) that blocks the flow of lymph fluid.

Cancer cells that spread to the lymph nodes. This can cause a blockage, leading to a build-up of fluid.

A nearby cancer that is pressing on the lymph vessels. This can cause a blockage in the lymph nodes close by.

Lymphoedema after cancer treatment

Lymphoedema can develop weeks, months or even years after cancer treatment. The most common places for lymphoedema to occur after cancer treatment are the following:

In the arm after breast cancer treatment (surgery or radiotherapy) to the armpit.

In the leg if cancer or its treatment affects the lymph nodes in the pelvis or groin area. This usually happens after surgery or radiotherapy for gynaecological cancers (cancer of the womb, cervix, ovary, or vulva) or anal cancer. Or it can happen after treatment to the lymph nodes in the groin for a type of skin cancer called melanoma.

Other areas lymphoedema can develop in are:

the breast or chest area, after breast cancer treatment

the pelvic area and genitals after surgery and/or radiotherapy to lymph nodes in the pelvis for cancers of the prostate, bladder, womb, vagina, testicles, penis or rectum

the face, head and neck after surgery or radiotherapy to lymph nodes in the neck.

It’s common to get swelling (oedema) near the surgery scar in the first days after surgery. This usually settles down gradually, but can take several weeks to go away completely. This type of swelling is not the same as lymphoedema.

Lymphoedema develops a few months or years after surgery to remove the lymph nodes. If you’re concerned about any swelling, always talk to your doctor or nurse.

Not everyone who has lymph nodes removed or radiotherapy to the lymph nodes will get lymphoedema, but there is a risk of developing it.

Causes of lymphoedema

Reducing your risk of getting lymphoedema after treatment

If you have had surgery to remove lymph nodes in your armpit or groin, or radiotherapy in the same area, you will always be at risk of developing lymphoedema. The risk is greater if you have had both surgery and radiotherapy to the lymph nodes.

Some people will have just one or two lymph nodes removed (sentinel lymph node biopsy or SLNB) rather than a complete group of nodes (lymph node clearance). If you have had an SLNB you are still at risk of getting lymphoedema, although the risk is lower. The sentinel node is the first node (or nodes, as there may be more than one) that lymph fluid drains to from a part of the body.

We do not know why some people develop lymphoedema after cancer treatments and others don’t. It’s possible that straining the limb or a skin infection may cause swelling in someone who is at risk of developing lymphoedema.

The body responds to inflammation and infection by producing extra fluid. If the lymphatic system in that area isn’t working as efficiently as it should be, the extra fluid could overload it and lead to lymphoedema.

Following the precautions and advice in this section may help to reduce your risk of lymphoedema.

Look after your skin

It’s very important to keep the area that’s at risk of lymphoedema clean and well moisturised. This reduces the risk of inflammation and infection. It’s also important to protect your skin from cuts and grazes, as well as insect bites and sunburn.

Look out for the early signs of infection

It’s important to be aware of early signs of an infection in the arm or leg at risk of lymphoedema. You can then have the infection treated immediately with antibiotics. Contact your GP straight away if you notice flu-like symptoms or any of the following signs of infection:

Try to exercise and keep active

Lymphatic drainage is improved by muscle activity. Regular exercise and keeping active will help encourage lymph fluid to drain and also helps with joint movement.

Gentle stretching exercises can help your arm or leg get back to normal after surgery or radiotherapy. They help recovery after surgery and are important to carry on for as long as advised. Exercises should be done gently and gradually. A physiotherapist will usually show you what exercises to do.

After your treatment is over you can usually get back to any physical activity or exercise programmes you were involved in before, or you may begin a new one. It’s important to start slowly and gradually increase the intensity. There may be some exercises you’ll need to be more careful about, such as weightlifting or sports that involve physical contact. This is because these exercises make you more likely to get a break in the skin or injure the affected limb.

Physical activity will help you feel better generally and help to keep your weight down. It encourages deeper breathing, which stimulates lymph fluid flow. Breathing exercises on their own or as part of yoga or pilates can also help.

Keep to a healthy weight

The risk of developing lymphoedema is increased if you’re overweight. It’s important to try to keep your weight within the normal range for your height. Your GP or practice nurse can tell you what your ideal weight should be. You can also ask them, or a dietitian, for advice and support on eating healthily.

Take care when travelling

Here are some tips on what you can do to reduce your risk of developing lymphoedema when travelling:

Avoid sitting in one position during the whole journey.

Move around often and do gentle stretching exercises when you travel by air or train.

During longer car journeys, make regular stops and get out and walk around.

Wear comfortable clothes and shoes, and avoid tight-fitting clothes.

Wear flight socks that fit well – your GP or specialist nurse can give you advice if you can’t find a pair to fit.

Use a suitcase on wheels that can be pulled instead of picking up or carrying a heavy bag.

You don’t normally need to wear a compression garment when travelling by air unless you have developed lymphoedema. However, if you have had any swelling caused by cancer or the treatment for it and you are travelling a long distance by air, your specialist will be able to advise you on what to do. They can tell you how helpful a compression garment might be in your situation.

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